A Child With Cancer Is Much More Than A “Case”: Why Words Matter in Retinoblastoma Care and Awareness
Originally Published: Saturday October 7, 2017
Updated and Republished: Monday January 20, 2025 for the Child Life in Rb Care Campaign
Can the language we use impact patient well-being, conduct of research and care? WE C Hope CEO and retinoblastoma survivor, Abby White, explores the effect of scientists, doctors and reporters referring to retinoblastoma patients as “cases” rather than children, and how our One Rb World community helps create a foundation of care that nurtures complete well-being.
“I Am a Child, Not a ‘Case’.”
As World Retinoblastoma Week approached in May 2012, I was heartened to see a many informative news articles around the world. The media has vast potential to raise awareness about the early signs of retinoblastoma and the life-saving importance of prompt eye exams, which can preserve both sight and life for affected children.
Yet, it saddens me to see both journalists and medical professionals repeatedly referring to children as “cases”. In one article, for example, a doctor shared excellent insights and vital information, but not once did the words “child” or “children” appear.
Instead, I read phrases like “by the time the cases come to us…”, and “if the cases are diagnosed early…”.
A comforting hug from Elmo after surgery.
From these quotes to the article’s end, the journalist used only the word “case”.
Sometimes journalists working to tight schedules unintentionally misquote, and I know the doctor quoted in this particular article cares deeply for the children she looks after.
Even so, the habitual use of ‘case’ rather than ‘child’ is common among journalists and medical professionals, and it can have unintended harmful consequences. As a survivor who advocates daily for families and fellow survivors, hearing this language deeply unsettles me.
All Eye Cancer Treatments Impact the Whole Child
Children with retinoblastoma are, first and foremost, individuals – whole human beings – who happen to have cancer in their eye(s). They are not simply a cancer-filled eye attached to a body. This distinction matters.
Defining a child as a “case” strips away their humanity, reducing them to a clinical label. It overlooks their complete wellbeing, and that of their family.”
This choice of language, perhaps unconscious, may subtly contribute to broader challenges we face today. Increasingly competitive research risks overshadowing the need to care for the whole child.
Treatment is about more than eradicating cancer. Is a cancer-free child truly “cured” if they are left grappling with post-traumatic stress disorder after enduring months or years of invasive procedures and treatment impacts?
In evaluating different treatments, we must consider a therapy’s ability to destroy the cancer, appraise side effects and risks, and also weigh up value of the treatment in relation to the child’s complete wellbeing. We must look beyond the physical body, to care for the child’s emotional health.
Focus On The Whole Child For Complete Wellbeing
“Case” is a very cold, clinical term, and it does have its place in scientific discussion. Perhaps it is also a healthy boundary for medical professionals who work very hard and could so easily be emotionally burned out by the daily challenge of delivering expert care to seriously ill children.
However, a child with retinoblastoma is not a medical specimen. They are a complete individual with thoughts, feelings, hopes, dreams, likes and dislikes. They have the ability to generate every kind of emotion in those of us who care for them. They are desperately loved, and most parents would give their own eye if it could spare their child’s suffering.
We are blessed that our One Rb World is home to many brilliant doctors, nurses and scientists dedicated to improving outcomes for children with retinoblastoma.
As we consciously choose to speak of “children”’, “’families”’, and “’survivors”’ – rather than “cases”, we create a foundation of care that treats cancer while also nurturing emotional and spiritual wellbeing. Together, we can ensure each child is both cancer-free and equipped to live a healthy, happy future.
Rati takes comfort in her special bear during chemotherapy treatment.
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.
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